Chronic Fatigue Syndrome Support Group

Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...

Retrovirus might be culprit in chronic fatigue syn

'Retrovirus might be culprit in chronic fatigue syndrome'
People with the condition are much more likely than others to harbor a little-known pathogen
By Nathan Seppa - Web edition: 1:50 pm
http://www.sciencenews.org/view/generic/id/48157/title/Retrovirus_might_be_culprit_in_chronic_fatigue_syndrome

The long, fruitless search for the cause of chronic fatigue syndrome has taken a curious turn. Scientists report online October 8 in Science that an obscure retrovirus shows up in two-thirds of people diagnosed with the condition. The researchers also show the retrovirus can infect human immune cells.

These findings dont establish that the pathogen, called gammaretrovirus XMRV, causes chronic fatigue, cautions study coauthor Robert Silverman, a molecular biologist at the Lerner Research Institute of the Cleveland Clinic. Nevertheless, its exciting because it is a viable candidate for a cause.

Roughly 1 to 4 million people in the United States have chronic fatigue syndrome, according to the Centers for Disease Control and Prevention. The condition shows up as mental and physical exhaustion, memory lapses, muscle pain, insomnia, digestive distress and other health problems. Doctors often diagnose chronic fatigue only after ruling out everything else. Its cause is unknown.

In the new study, the researchers tested blood from 101 people with chronic fatigue syndrome and found that 68 were infected with XMRV. When the scientists analyzed blood from 218 healthy people as a control group, only eight had the virus 4 percent. The study participants lived in various parts of the United States.

This is a very striking association two-thirds of the patients, says John Coffin, a virologist at Tufts University in Boston who wasnt involved in the study. A 4 percent infection rate in the healthy controls is also substantial, he notes, because it suggests that 10 million people in the United States are harboring this hidden infection.

If the retrovirus indeed is found to cause chronic fatigue, the infected 4 percent in the control group might represent people who have been infected for a short time and havent developed symptoms, or who have kept the virus in check, says study coauthor Judy Mikovits, a cell biologist at Whittemore Peterson Institute in Reno and at the University of Nevada, Reno.

Based on its genetic makeup, XMRV arose from a mouse retrovirus that somehow jumped to humans.

Mikovits asserts that the retroviral infection might result in an immune deficiency that leads to chronic fatigue symptoms. Retroviruses are known to attack the immune system, with HIV being the best-known example. In this study, researchers showed that XMRV infected immune cells in the blood.

This may end the controversy as to whether there is an underlying infection in some cases of chronic fatigue syndrome, but is unlikely to explain all cases, says internist Dedra Buchwald of the University of Washington in Seattle. Retroviruses can awaken latent viruses already in cells. It is possible that chronic fatigue symptoms are caused not by XMRV but by other viruses that it activates, she says.

Meanwhile, retroviruses harbor pro-growth genes, and some cause the blood cancer leukemia in animals and people. XMRV or xenotropic murine-leukemia-virusrelated virus itself shows up in some men with prostate cancer, particularly those with aggressive malignancies, another research team reported last month in the Proceedings of the National Academy of Sciences.

Gammaretroviruses, a subset of retroviruses, also cause disease in gibbons, cats and koalas, Silverman says. XMRV is the first member of this genus of retrovirus to be found in humans, he notes.

In the new study, the researchers also found hints that the retrovirus is transmitted by blood, as are some other viruses, including HIV. But its probably not spreading very fast, because people with chronic fatigue are too sick to do anything, Mikovits says.

Further research is under way to fine-tune testing for the retrovirus, and more blood analyses are planned that will clarify its occurrence rate in the general population. Mikovits and her colleagues are investigating already-approved antiretroviral drugs to see if these will benefit people who have chronic fatigue

Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.

An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, a devastating condition about which there is little medical consensus. CFS is characterized by debilitating fatigue and chronic pain, among other symptoms, but diagnosis is generally made by ruling out other diseases, and there are no specific treatments.

Many patients say they are told by doctors that their problems are psychological, so a study showing a strong...(subscription required for full article)

WASHINGTON (Reuters) - A virus linked to prostate cancer also appears to play a role in chronic fatigue syndrome, according to research that could lead to the first drug treatments for a mysterious disorder that affects 17 million people worldwide.

Researchers found the virus, known as XMRV, in the blood of 68 out of 101 chronic fatigue syndrome patients. The same virus showed up in only 8 of 218 healthy people, they reported on Thursday in the journal Science.

Judy Mikovits of the Whittemore Peterson Institute in Nevada and colleagues at the National Cancer Institute and the Cleveland Clinic emphasized that the finding only shows a link between the virus and chronic fatigue syndrome, or CFS, and does not prove that the pathogen causes the disorder.

Much more study would be necessary to show a direct link, but Mikovits said the study offers hope that CFS sufferers might gain relief from a cocktail of drugs designed to fight AIDS, cancer and inflammation.

&quot;You can imagine a number of combination therapies that could be quite effective and could at least be used in clinical trials right away,&quot; Mikovits said in a telephone interview.

She said AIDS drugs such as non-nucleoside reverse transcriptase inhibitors and integrase inhibitors as well as nonsteroidal anti-inflammatory drugs and cancer-fighting proteasome inhibitors could be tested as potential treatments for CFS.

Takeda Pharmaceutical Co Ltd makes a cancer drug called Velcade that is a proteasome inhibitor, although there are no reports that it has been tested against XMRV.

INCAPACITATING FATIGUE

CFS impairs the immune system and causes incapacitating fatigue, according to the U.S. Centers for Disease Control and Prevention. Sufferers can also experience memory loss, problems with concentration, joint and muscle pain, headaches, tender lymph nodes and sore throats.

Symptoms last at least six months and can be as disabling as multiple sclerosis or rheumatoid arthritis, the CDC said.

But Mikovits said there is currently no treatment for CFS aside from cognitive behavioral therapy to help patients cope with the disorder's crippling effects.

The XMRV virus is a retrovirus, like the HIV virus that causes AIDS. As with all viruses, a retrovirus copies its genetic code into the DNA of its host but uses RNA -- a working form of DNA -- instead of using DNA to do so.

Known formally as xenotropic murine leukemia virus-related virus, XMRV has also been found in some prostate tumors and is also known to cause leukemia and tumors in animals.

Mikovits' team said further research must now determine whether XMRV directly causes CFS, is just a passenger virus in the suppressed immune systems of sufferers or a pathogen that acts in concert with other viruses that have been implicated in the disorder by previous research.

&quot;Conceivably these viruses could be co-factors in pathogenesis, as is the case for HIV-mediated disease, where co-infecting pathogens play an important role,&quot; the report said.

Because 3.7 percent of the healthy test population tested positive for XMRV, the researchers said several million otherwise healthy people in the United States could be infected with it.

Researchers have linked an infectious virus known to cause cancer in animals to chronic-fatigue syndrome, a major discovery for sufferers of the condition and one that concerned scientists for its potential public-health implications.

An estimated 17 million people world-wide suffer from chronic-fatigue syndrome, a devastating condition about which there is little medical consensus. CFS is characterized by debilitating fatigue and chronic pain, among other symptoms, but diagnosis is generally made by ruling out other diseases, and there are no specific treatments.

Many patients say they are told by doctors that their problems are psychological, so a study showing a strong association between a virus and CFS is likely to change the field.

But the significance of the finding, published Thursday in Science, extends far beyond the community of people living with CFS. Researchers are just as concerned about the finding that nearly 4% of healthy people used as controls in the study were also infected with the virus, called XMRV. If larger studies confirm these numbers, it could mean that as many as 10 million people in the U.S. and hundreds of millions of people around the world are infected with a virus that is already strongly associated with at least two diseases.

The study was done by researchers at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., the National Cancer Institute and the Cleveland Clinic.
In September, researchers at the University of Utah and Columbia University Medical Center found XMRV in 27% of the prostate-cancer samples they examined. That study also showed that 6% of the benign prostate samples had XMRV. The chronic-fatigue study is the first to find live XMRV virus in humans.

Neither study conclusively shows that XMRV causes chronic-fatigue syndrome or prostate cancer. But the National Cancer Institute was sufficiently concerned to convene a closed-door workshop in July to discuss the public-health implications of XMRV infection. &quot;NCI is responding like it did in the early days of HIV,&quot; says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.

Like HIV, XMRV is a retrovirus, meaning once someone is infected, the virus permanently remains in the body; either a person's immune system keeps it under control or drugs are needed to treat it. The virus creates an underlying immune deficiency, which might make people vulnerable to a range of diseases, said Judy Mikovits of the Whittemore Peterson Institute and one of the lead authors on the paper.

So far, XMRV, known fully as xenotropic murine leukemia virus-related virus, doesn't appear to replicate as quickly as HIV does. Scientists also don't know how XMRV is transmitted, but the infection was found in patients' blood samples, raising the possibility that it could be transmitted through blood or bodily fluids.

Dr. Le Grice of the NCI said the highest priority now was to quickly develop a validated blood test or other assay that could be used in doctors' offices to determine who has XMRV. At the workshop, participants also raised the issue of protecting the nation's blood supply. Dr. Le Grice said there isn't enough evidence yet to suggest that people with XMRV shouldn't be blood donors but that determining how XMRV is transmitted was a critical issue. &quot;A large effort is under way to answer all these questions,&quot; he said. &quot;I do not want this to be cause for panic.&quot;

Although Thursday's scientific paper doesn't demonstrate conclusively that XMRV is a cause of CFS, additional unpublished data make it a very strong possibility. Dr. Mikovits said that using additional tests, the scientists determined that more than 95% of the patients in the study are either infected with live virus or are making antibodies that show their immune systems mounted an attack against XMRV and now had the virus under control. &quot;Just like you cannot have AIDS without HIV, I believe you won't be able to find a case of chronic-fatigue syndrome without XMRV,&quot; Dr. Mikovits said.

At the July workshop, Dr. Mikovits also presented preliminary data showing that 20 patients of the 101 in the study have lymphoma, a rare form of cancer. The link between XMRV and lymphoma is still being investigated, but it raised the possibility that XMRV may be associated with other cancers in addition to prostate cancer. NCI's Dr. Le Grice said studies will be launched to determine whether XMRV is associated with other diseases. At the Whittemore Peterson Institute, Dr. Mikovits said they also found XMRV in people with autism, atypical multiple sclerosis and fibromyalgia.

The Science study was based on blood samples from a national repository at the Whittemore Peterson Institute collected from doctors in cities where outbreaks of chronic-fatigue syndrome occurred during the 1980s and '90s. One of the key questions that the NCI's Dr. Le Grice says must now be answered is whether XMRV shows up in large numbers of CFS patients all over the country.

Robert Silverman, a professor at the Cleveland Clinic Lerner Research Institute who is one of the co-authors of the study and one of the discoverers of the XMRV virus, said he believes the virus began in mice and then spread to humans, and that &quot;in most cases, people's immune systems are probably able to control the virus.&quot; Researchers are already starting to test antiretroviral therapies developed for AIDS to see if they are effective against XMRV.

The work on XMRV in chronic-fatigue patients initially was funded by Annette and Harvey Whittemore and the University of Nevada, Reno. The Whittemores set up the institute in 2006 after watching their daughter Andrea suffer from chronic-fatigue syndrome for most of her life. They spent millions of their own money to pay for administrative services, office space, lab equipment and research operations. They were frustrated by the lack of government funding for scientific research into the disease. At their home in Reno, the Whittemores' daughter, Andrea Whittemore-Goad, 31 years old, used oxygen before speaking about the devastating toll CFS has taken on her.

Ms. Whittemore-Goad says she was a regular school girl, playing sports and involved in school activities, until the age of 10, when she became ill with a monolike virus that she couldn't shake. She said doctors first told her parents that the illness was psychological, that she had school phobia and was under stress from her parents. &quot;We kept searching for an answer,&quot; says Ms. Whittemore-Goad, who says lymph nodes in her groin were so painful that her brothers and sisters used to have to carry her upstairs. She was diagnosed at age 12 with chronic-fatigue syndrome.

Over the years, doctors have treated her symptoms, like intense headaches and severe pain, but the illness persists. She has had her gallbladder, spleen, and appendix removed because they became infected. She tried an experimental drug that she says gave her relief for years, but she then started experiencing side effects and had to stop taking it. Recently the illness has become worse; she began suffering seizures and can no longer drive.

Sitting on the couch next to her husband, whom she married six months ago after meeting, Ms. Whittemore-Goad says the news that she is infected with XMRV &quot;made everything that has happened to me make sense.&quot; Brian Goad, her husband, said he felt relieved knowing &quot;now we can find a way to treat and hopefully cure it.&quot; For both of them, the discovery of the virus is life-changing. There are more than 10 families in the group where family members also tested positive for XMRV. Members of the Whittemore family are now being tested.

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